Kinnick Kay and Carver Lee: January 12th, 2011

Wednesday, January 12, 2011

January 12th, 2011

It's been a while since I posted an update on Kinnick and Carver. Life's been a lot busier, lately. I returned to work Full time in November. Then there was Thanksgiving, then Christmas, then Dad's Cancer. Adjusting to Full time hasn't been too bad, but it doesn't leave much time to do the things I need to do at home. I'm hoping that with the holidays being behind us, I can finally get adjusted. There are still so many things that need added to my schedule. Kinnick and Carver both need eye appointments. Their eye appointments take forever. I'm not talking about eye appointments in Michigan. I'm talking about vision appointments here in town. I haven't been to the dentist in forever, so I need to make an appointment to get my teeth cleaned. I need to start working out regularly. We're in desperate need of a vacation. We've looked at a few places, but we don't even know where we want to go. Kinnick and Carver's IEP's are due in March, and I'm dreading the process. I'm still worried about their health. I know they would do great in school, but the health issues continue to be a problem.

The results of Carver's botox are starting to show. I'm not seeing the huge differences that I was expecting. It's made a difference, but not to the extent that I expected. His legs are more relaxed, but still scissor easily. He's not as tight as he was before. I can tell that the muscles are a little looser.

We got the Merry Muscles jumper that we ordered before Christmas and the kids love it! It's much more size appropriate. I need to post a video to show how much fun the kids are having in it.

Carver is doing a little better in his Pony. He needs prompted to move, but once he gets going he really likes it. It's nice to see Kinnick and Carver at the same height. Today, Kinnick raced around the kitchen next to Carver while pushing her corn popper.

Kinnick has had an ongoing cold that has required the use of oxygen during the day on several occasions.

We still haven't received our approval for Carver's cochlear implant. Not that it matters, Advanced Bionic's recall is still in effect, so we couldn't get the implant yet, anyway. I'm frustrated that it is all taking so long, and I haven't really had the time to check on it.

There are so many things to talk about, but it's late. I'll update more later.

Thanks for all of the thoughts and prayers for my Dad. I truly appreciate it.

2 comments:

Anonymous said...: I'm glad you are doing the blog for your dad. I love the verse you picked out on there. Hope the kids stay healthy. I don't blame you for being cautious about sending them to school right now with health issues. Stuff goes around like crazy! Hope you get a chance to get some rest!
Love
Neva; January 13, 2011 at 9:30 PM
Sherri said...: Thanks for the info. We are praying for you and your family during this stressfull time.

We should try and go out sometime..even if its just for an hr or so. I will try and call ya tonight after class. I am getting ready for our IEP meeting friday (dread) so that has consumed me. I miss chatting with you though. I have been thinkin' about you guys. Even Cale asked how the kids were doing :); January 18, 2011 at 10:19 AM

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Disability Determination when you don't qualify Financially

In order to extend Cobra medical coverage 11 months due to a Disabled member of the family, a Disability Determination Award letter is required. How do you secure a Disability Determination if you are not intitled to an Award? You ask for a Special Determination (SSA-553) of Disability. How did we get this? Here are my contacts:

We live in Wichita, KS. My contact at the Social Security Administration in Wichita was Nick Janzen. His phone number is 866-931-4486.

The Kansas/Nebraska/Iowa/Missouri Regional SSA office is located in Kansas City. My contact in the Kansas City Office is Mike Stiles. His phone number is 816-936-5740. Mike is able to communicate with all of the Disability Experts including those at the national headquarters in Baltimore, MD. Mike was able to guide my Wichita, KS contact, Nick in order to complete the necessary paperwork to obtain a Disability Determination even though we didn't qualify under Title II or Title XV1.

Here's is how it worked:

Nick completed a paper SSA-3820 (for a child), and obtained as much medical evidence as possible from me. He also prepared an SSA-5002 with the date of my qualiffying event (date I went on Cobra initially). This material was then sent to the following Address:

Office of Medical and Vocational Expertise

P.O. Box 17786

Baltimore, MD 21235-7786

A Manual Development Worksheet (MDW) was used to document my case.

The OMVE will prepare and release the appropriate notice for this type of case and will return the completed case to the field office along with a special determination (SSA-553) of disability and a copy of the notice.

Overnight address:

SSA, Office of Medical and Vocational Expertise

1st Floor Oak Meadows Building

6401 Security Blvd

Baltimore, MD 21235

Sedgwick County Developmental Disability Organization - MRDD Waiver information

Kinnick and Carver are on the MRDD Waiver. This is a needs based program based on being mentally retarded or developmentally delayed - not income. So, regardless of income, you may qualify. What benefit are we getting from the MRDD waiver? If you are on this program at age 5, you will receive a medicaid card. Prior to turning age 5 (while on the waiting list), you qualify for case management and family support funds. Case management is very helpful in helping you find funding sources if needed. The family support funds have provided all of K&C's expensive equipment needs. Due to budget cuts, the family support funds are not available this year, but could return at any time. You shouldn't wait to sign up for this program. There is a waiting list to receive the medicaid card at age 5. The waiting list is 2 years or longer. Therefore the sooner you get on the waiting list the better. You do not have to be 5 to be on the waiting list.

How do you apply for the MRDD Waiver program?

Rachel Ryan

Intake and Referral Coordinator (SCDDO)

615 N. Main

Wichita, KS 67203

(316)-660-7640

http://www.sedgwickcounty.org/cddo

Kansas Medicaid - Travel Expenses

I'm posting this to help others. It has been a struggle to get Medicaid to pay for our travel expenses. I have been able to get them to commit to paying $81.00/day hotel expense, $27.00/day for food, and .20/mile for mileage to/from.

The KEY is to call the number(s) below before you leave on the trip (unless it is an emergency).

1-800-285-4978 Option 2 (Out of State Prior Auth)
The doctor from the referring hospital/office and the doctor that you will be seeing will need to send paperwork for your approval. You can call this number to confirm this is getting done.

1-888-561-8747 x5002 (Meals and Lodging)
Let them know where you are going and how long you think you will be there. You will have to call every 2 wks to extend the time. They only approve 2 wks at a time.

1-888-240-6497 (Transportation)
Let them know where you are going and how long you think you will be there. You will have to call every 2 wks to extend the time. They only approve 2 wks at a time.

Medical Transportation Approval Process

In order to obtain approval for Medical Transport, the following steps were followed:

1.) Kinnick and Carver's primary physician (Pediatrician) wrote a "Letter of Medical Necessity". Below is a small sampling of the letter:

LETTER OF MEDICAL NECESSITY

Date:
Insurance Company:
RE: Kinnick and Carver
DOB:
Diagnosis: ROP, 23 wk gestation twins, severe chronic lung disease.

Attention Medical Director:

The letter requested approval for an air ambulance round trip flight for the specific eye surgery. It then listed medical reasons why Kinnick and Carver's medical needs meet criteria for air ambulance transport for their eye surgery. Their medical needs consisted of the following:

Continuous oxygen per nasal cannula
Continuous cardiac and respiratory monitoring
Feeding intolerance that requires gastrostomy feeds
Deep suctioning using a suction machine and catheter

Signed by the Primary Physician

2.) My Primary Physician faxed the Letter to Kinnick and Carver's Case Manager at my Insurance Company.

3.) Kinnick and Carver's Case Manager forwarded the Letter to the Medical Director for approval. This process only took a couple of days.

4.) Kinnick and Carver's Case Manager faxed the Approval to Air Ambulance and my Primary Physician.

Kinnick Kay and Carver Lee

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